Abstract Details

Title Pediatric to Adult MS Transition Practices in the US

Topic Multiple Sclerosis

Presentation(s) P1 - Poster Session 1 (8:00 AM-9:00 AM)

Poster/Presentation
Number 6-007

Background Transitioning patients from pediatric to adult medical care is challenging. Children with rare chronic diseases like MS are particularly vulnerable to lapses in medical management. Characterizing current transition practices may help identify target areas for improving MS care in children as they enter adulthood.

Objective To explore practice differences in the transition of patients from pediatric to adult MS care at ten major pediatric MS centers across the US.

Design/Methods A survey of transition practices was circulated to ten sites in the US Network of Pediatric MS Centers.

Results Response rate was 100%. 50% of sites accept new referrals up to age 18, while the remainder accept older patients. Typical transition age at half of centers is 22, while one (10%) delays until 26. Only one site (10%) initiates transition conversations at age 15, while the rest do so at an older age. 70% do not use a formal transition protocol. 40% typically transition to the same provider in an adult-based setting, while 50% transfer to adult MS colleagues within the same institution. Only 60% feel there is adequate support to assist families with the transition process. Factors each site uses to assess transition readiness differs widely. 100% are interested in a Pediatric MS Transition Readiness Guide.

Conclusions There was wide variability in pediatric to adult MS transition practices across the US. A large proportion of sites identified major challenges and shortcomings in current transition methodologies. Further research should help guide optimal transition from pediatric to adult MS care.

Authors/Disclosures
Aaron W. Abrams, MD (Cleveland Clinic Foundation) PRESENTER	Dr. Abrams has nothing to disclose.
Skyler Peterson (University of Utah)	No disclosure on file
Jonathan Race	No disclosure on file
Akash Virupakshaiah, MD (UCSF)	Dr. Virupakshaiah has nothing to disclose.
Kimberly O'Neill, MD	Dr. O'Neill has nothing to disclose.
Claudia Gambrah-Lyles, MD	Dr. Gambrah-Lyles has nothing to disclose.
Kristen Fisher, DO (Baylor College of Medicine)	Dr. Fisher has nothing to disclose.
Soe S. Mar, MD, FAAN (Washington University School of Medicine)	The institution of Dr. Mar has received research support from NIH.
Emmanuelle Waubant, MD, PhD, FAAN (USCF MS Center)	Dr. Waubant has received personal compensation in the range of $500-$4,999 for serving as a Consultant for emerald pharmaceuticals. Dr. Waubant has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for elsevier. The institution of Dr. Waubant has received research support from NIH. The institution of Dr. Waubant has received research support from NMSS. The institution of Dr. Waubant has received research support from PCORI. The institution of Dr. Waubant has received research support from Race to Erase MS. The institution of Dr. Waubant has received research support from Roche. The institution of Dr. Waubant has received research support from Biogen. The institution of Dr. Waubant has received research support from Department of Defense. Dr. Waubant has received publishing royalties from a publication relating to health care.
Moses Rodriguez, MD, FAAN (Mayo Clinic Department Of Neurology)	Dr. Rodriguez has received intellectual property interests from a discovery or technology relating to health care.
Jan-Mendelt Tillema, MD (Mayo Clinic)	Dr. Tillema has nothing to disclose.
Teri Schreiner, MD, MPH, FAAN (University of Colorado/ Children's Hospital of Colorado)	The institution of Dr. Schreiner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CDC. Dr. Schreiner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. The institution of Dr. Schreiner has received research support from Roche Genentech.
Mary R. Rensel, MD, FAAN	Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. Dr. Rensel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cycle Pharma. Dr. Rensel has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for biogen. Dr. Rensel has stock in Brain Fresh LLC . The institution of Dr. Rensel has received research support from NMSS. The institution of Dr. Rensel has received research support from Roche- Genentech .
Tanuja Chitnis, MD, FAAN (Brigham and Women's Hospital)	Dr. Chitnis has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. Dr. Chitnis has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Roche-Genentech. Dr. Chitnis has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Siemens. Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Octave Biosciences. Dr. Chitnis has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Academic CME. The institution of Dr. Chitnis has received research support from Novartis. The institution of Dr. Chitnis has received research support from Sanofi. The institution of Dr. Chitnis has received research support from Octave. The institution of Dr. Chitnis has received research support from Genentech-Roche.
Lauren B. Krupp, MD, FAAN (NYU Langone Medical Center)	Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gerson Lerhman. Dr. Krupp has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for medscape. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NeuroLive. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai. Dr. Krupp has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for Cleveland Clinic. Dr. Krupp has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for MCIC. The institution of Dr. Krupp has received research support from Biogen. The institution of Dr. Krupp has received research support from National Multiple Sclerosis Society. Dr. Krupp has received intellectual property interests from a discovery or technology relating to health care.
Timothy E. Lotze, MD, FAAN (Texas Children's Hospital)	Dr. Lotze has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Department of Justice VICP. The institution of Dr. Lotze has received research support from NIH. The institution of Dr. Lotze has received research support from National MS Society. The institution of Dr. Lotze has received research support from Sarepta Therapeutics. The institution of Dr. Lotze has received research support from PTC THERAPEUTICS. The institution of Dr. Lotze has received research support from Avexis. Dr. Lotze has received publishing royalties from a publication relating to health care.
Theron C. Casper, PhD (University of Utah)	The institution of Dr. Casper has received research support from NIH. The institution of Dr. Casper has received research support from The National Multiple Sclerosis Society. The institution of Dr. Casper has received research support from Roche. The institution of Dr. Casper has received research support from Biogen.
Yolanda Wheeler	No disclosure on file
Jayne Ness, MD (UAB Dept of Pediatrics, Div Pediatric Neurology)	An immediate family member of Dr. Ness has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jan One. The institution of Dr. Ness has received research support from Chugai/Roche. The institution of Dr. Ness has received research support from National Multiple Sclerosis Society. The institution of an immediate family member of Dr. Ness has received research support from NIH. An immediate family member of Dr. Ness has received publishing royalties from a publication relating to health care.
Mark Gorman, MD	The institution of Dr. Gorman has received research support from Pfizer. The institution of Dr. Gorman has received research support from Roche / Genetech .
Leslie A. Benson, MD (Children's Hospital Boston)	The institution of Dr. Benson has received research support from ROHHAD Fight, Inc. The institution of Dr. Benson has received research support from Shore Foundation. The institution of Dr. Benson has received research support from Alexion Pharmacuticals. The institution of Dr. Benson has received research support from Biogen, Inc. The institution of Dr. Benson has received research support from NIH. Dr. Benson has received personal compensation in the range of $0-$499 for serving as a consultant with MA Department of public health. Dr. Benson has received personal compensation in the range of $5,000-$9,999 for serving as a consultant with National vaccine injury compensation program.
John W. Rose, MD, FAAN (Imaging and Neurosciences Center)	The institution of Dr. Rose has received research support from National Multiple Sclerosis Society. The institution of Dr. Rose has received research support from Guthy Jackson Charitable Foundation. The institution of Dr. Rose has received research support from NIH . The institution of Dr. Rose has received research support from VA. The institution of Dr. Rose has received research support from Biogen. The institution of Dr. Rose has received research support from Friends of MS. Dr. Rose has received intellectual property interests from a discovery or technology relating to health care.